Abstract
This research explores and provides an understanding of what the AIDS Quilt Aotearoa New Zealand means to people whose lives have been affected by an HIV / AIDS related bereavement. It focuses on the quilt as an important cultural artefact which draws together individual images of loss and pain and the collective identity of oppressed people, enabling them to communicate more effectively who they are and thus contribute to positive change.
Using an ethnographic approach and participant observation perspectives I invited eighteen participants, during in-depth interviews, to describe their experience as witnesses to the illness and death of a loved friend or family member; and their consequent decision to create and present a quilt panel to the AIDS quilt project. Computer assisted prose analysis was juxtaposed with experimental analytical writing, in the form of elegaic story-poems; and with photographic images of the New Zealand AIDS memorial quilt, to examine and present their experience. The NUD*IST software package which has been developed in response to the needs of active social scientists and in particular to serve the grounded theory approach to research, was central to this analysis.
The major outcome of the study was the development of a five phase grounded theory description of creative mourning in response to HIV / AIDS loss. The participants first described a strong sense of insulation from the virus. They did not think that it could ever reach New Zealand, or that their family, their friends or their own lives could be affected. Consequently, when they received the news that a friend or family member had contracted the disease they were thrown into a state of dislocation. Cherished beliefs began to disintegrate, prejudice and fear were encountered, and emotional chaos overtook them. In the third phase participants began a process of modification, making gradual changes to reduce the severity of the impact of their loss. In the integration phase they became much more proactive and began to address the injustices perpetrated against those affected by HIV / AIDS. The creative activity of making a quilt panel became the focus for the construction of new meanings around their experience. In the final phase of liberation the Quilt became a site for transformation where the HIV / AIDS bereaved were able to reassert their voice and positon in the world. The symbolic and ritual dimensions of the Quilt have helped the bereaved to find freedom from oppression and an effective response to HIV / AIDS loss.